Hi.
嗨!
Thank you.
谢谢你们。
[Jennifer Brea is sound-sensitive. The live audience was asked to applaud ASL-style, in silence.]
【詹妮弗·布雷亚对声音非常敏感 因此要求现场的观众以手语的方式 安静地鼓掌。】
So, five years ago, this was me. I was a PhD student at Harvard, and I loved to travel. I had just gotten engaged to marry the love of my life. I was 28, and like so many of us when we are in good health, I felt like I was invincible.
这是五年前的我, 我是哈佛大学的一名博士生, 并且热爱旅行, 我刚与我人生的挚爱订婚, 我28岁,和大部分人 一样身体非常健康, 我觉得自己无所不能。
Then one day I had a fever of 104.7 degrees. I probably should have gone to the doctor, but I'd never really been sick in my life, and I knew that usually, if you have a virus, you stay home and you make some chicken soup, and in a few days, everything will be fine. But this time it wasn't fine. After the fever broke, for three weeks I was so dizzy, I couldn't leave my house. I would walk straight into door frames. I had to hug the walls just to make it to the bathroom. That spring I got infection after infection, and every time I went to the doctor, he said there was absolutely nothing wrong. He had his laboratory tests, which always came back normal. All I had were my symptoms, which I could describe, but no one else can see. I know it sounds silly, but you have to find a way to explain things like this to yourself, and so I thought maybe I was just aging. Maybe this is what it's like to be on the other side of 25.
有一天我高烧40.3度, 可能我应该去看个医生, 但是当时我认为我 这辈子不可能真的生病, 而且我知道,通常来说 如果你被病毒感染, 在家躺着休息,喝点鸡汤, 过几天就什么事都没有了。 但是这一次它没有好, 高烧之后, 整整三个星期我头昏眼花到无法出门, 我直走都能撞到门框上, 我不得不扶着墙才能去洗手间。 那个春天 我连续被病毒感染, 但是每次我去医院, 医生都确定我的身体完全没什么问题。 他实验室的检测结果, 永远都显示正常, 所有的都是, 只有我能描述出来, 其他人都无法察觉的症状。 我知道这听起来很蠢, 但是你不得不找到一个方式来 解释发生在自己身上的一切, 所以我想我大概只是在衰老, 或许这就是二十五岁的另外一面。
(Laughter)
(笑声)
Then the neurological symptoms started. Sometimes I would find that I couldn't draw the right side of a circle. Other times I wouldn't be able to speak or move at all. I saw every kind of specialist: infectious disease doctors, dermatologists, endocrinologists, cardiologists. I even saw a psychiatrist. My psychiatrist said, "It's clear you're really sick, but not with anything psychiatric. I hope they can find out what's wrong with you."
接下来神经方面的症状开始出现, 我发现有时候我无法画出圆的右半边, 有时候我发现 我完全不能说话或者移动, 我见过各种专家, 感染病医生、皮肤病医生, 内分泌医生、心脏病医生, 我甚至去看过精神病医生。 我的精神病医生说 “很明显你现在在生病, 但这和精神疾病没有任何关系, 我希望其他医生可以找到你的病因。”
The next day, my neurologist diagnosed me with conversion disorder. He told me that everything -- the fevers, the sore throats, the sinus infection, all of the gastrointestinal, neurological and cardiac symptoms -- were being caused by some distant emotional trauma that I could not remember. The symptoms were real, he said, but they had no biological cause.
第二天 我的神经病学医生 诊断我得了一种转化性疾患, 他告诉我,所有症状-- 发烧、嗓子疼、鼻窦炎, 所有的胃肠疾病 神经和心脏方面的症状-- 都是由某些持续性精神创伤引起的, 而这些创伤我都不记得了, 他说,这些症状是真实存在的。 但是却没有任何生物学病因,
I was training to be a social scientist. I had studied statistics, probability theory, mathematical modeling, experimental design. I felt like I couldn't just reject my neurologist's diagnosis. It didn't feel true, but I knew from my training that the truth is often counterintuitive, so easily obscured by what we want to believe. So I had to consider the possibility that he was right.
我被培养成为一名社会科学家, 我学习过统计学、概念理论, 数学建模和实验设计, 我觉得我没有办法 反驳这位神经学医生的诊断, 这感觉很不真实, 但我的专业知识告诉我 真相往往与直觉相悖, 所以很容易被我们的主观想法所掩盖, 所以我不得不考虑 他的诊断可能是对的,
That day, I ran a small experiment. I walked back the two miles from my neurologist's office to my house, my legs wrapped in this strange, almost electric kind of pain. I meditated on that pain, contemplating how my mind could have possibly generated all this. As soon as I walked through the door, I collapsed. My brain and my spinal cord were burning. My neck was so stiff I couldn't touch my chin to my chest, and the slightest sound -- the rustling of the sheets, my husband walking barefoot in the next room -- could cause excruciating pain. I would spend most of the next two years in bed.
那天,我进行了一个小实验, 我从距离两英里的 神经学家的办公室走回家, 我的腿被一种奇怪的 像电流一样的疼痛缠住, 我认真思考了那种疼痛, 思考我的意识如何能带来这一切, 在我走过家门的一瞬间, 我倒在地上。 我的大脑和脊髓灼烧般的疼痛, 我的脖子僵硬到我的胸 甚至无法碰到下巴, 最轻微的声音, 纸张发出的沙沙声。 我丈夫赤着脚在隔壁房间走路的声音, 都能引发令人煎熬的痛苦, 而接下来的两年,我大部分的 时间都是在床上度过的,
How could my doctor have gotten it so wrong? I thought I had a rare disease, something doctors had never seen. And then I went online and found thousands of people all over the world living with the same symptoms, similarly isolated, similarly disbelieved. Some could still work, but had to spend their evenings and weekends in bed, just so they could show up the next Monday. On the other end of the spectrum, some were so sick they had to live in complete darkness, unable to tolerate the sound of a human voice or the touch of a loved one.
我的医生怎么会弄错呢? 我想我是得了一种罕见的病, 有些东西医生都没有见过, 于是我上网寻找, 发现无数的人, 和我有相同的症状, 一样的孤独, 一样的怀疑, 他们中一些人仍然可以工作, 但是不得不整个晚上 和周末躺在床上休息, 这样在下一个星期一 他们还可以继续工作, 而这个圈子的另一端。 有一些人生病太重, 一部分人已经太过虚弱所以他们 不得不生活在彻底的黑暗中, 无法忍受任何声音, 或者是来自爱人的触碰,
I was diagnosed with myalgic encephalomyelitis. You've probably heard it called "chronic fatigue syndrome." For decades, that's a name that's meant that this has been the dominant image of a disease that can be as serious as this. The key symptom we all share is that whenever we exert ourselves -- physically, mentally -- we pay and we pay hard. If my husband goes for a run, he might be sore for a couple of days. If I try to walk half a block, I might be bedridden for a week. It is a perfect custom prison. I know ballet dancers who can't dance, accountants who can't add, medical students who never became doctors. It doesn't matter what you once were; you can't do it anymore. It's been four years, and I've still never been as well as I was the minute before I walked home from my neurologist's office.
我被确诊为肌痛性脑脊髓炎。 你可能也听说过它被称为 “慢性疲劳综合症”, 几十年来,这种病的, 主要形象正如, 这张图片所展示的, 也是这种病所能达到的严重程度, 我们所共有的关键症状就是, 每当我们消耗自己—体力,精力— 我们越来越辛苦, 如果我丈夫出去跑步 他可能会全身酸痛几天, 如果我试图走半个街区 我也许就要整整一周卧床不起, 这是个完美的定制监狱, 我知道不能跳舞的芭蕾演员, 不能计算的会计师, 永远无法成为医生的医学生, 这和你曾经做什么毫无关系。 你再也不能继续做了。 四年以来, 我仍然无法恢复到, 我从我的神经学医生办公室 走回家之前的那一刻。
It's estimated that about 15 to 30 million people around the world have this disease. In the US, where I'm from, it's about one million people. That makes it roughly twice as common as multiple sclerosis. Patients can live for decades with the physical function of someone with congestive heart failure. Twenty-five percent of us are homebound or bedridden, and 75 to 85 percent of us can't even work part-time. Yet doctors do not treat us and science does not study us. How could a disease this common and this devastating have been forgotten by medicine?
据估计,全世界 有150万到300万人, 患有这种疾病, 在我所在的美国,大约有100万人, 普遍性是多发性硬化症人数的两倍, 只要器官保持运作, 充血性心肌衰竭病人可以生活几十年, 而我们当中的25%的人是 生病在家或者卧床不起, 75%到85%连兼职工作 都没有办法完成, 但是医生并不治疗这种疾病。 也没有学科研究这个病, 一个如此常见且有杀伤力的疾病, 怎么能被医学给遗忘了?
When my doctor diagnosed me with conversion disorder, he was invoking a lineage of ideas about women's bodies that are over 2,500 years old. The Roman physician Galen thought that hysteria was caused by sexual deprivation in particularly passionate women. The Greeks thought the uterus would literally dry up and wander around the body in search of moisture, pressing on internal organs -- yes -- causing symptoms from extreme emotions to dizziness and paralysis. The cure was marriage and motherhood.
当我的医生诊断我患了转化性疾患时, 他引用了一系列有2500年历史的, 关于女性身体的观点, 罗马医学家迦林认为, 癔病是有由性生活不足造成的, 尤其是那些性欲旺盛的女性, 希腊人认为子宫确实会干涸, 然后在身体中四处游走寻找水分, 压迫着身体内的器官。 是的, 引起的症状从极端的情绪, 到头晕、麻痹, 而治疗方法就是结婚和生子,
These ideas went largely unchanged for several millennia until the 1880s, when neurologists tried to modernize the theory of hysteria. Sigmund Freud developed a theory that the unconscious mind could produce physical symptoms when dealing with memories or emotions too painful for the conscious mind to handle. It converted these emotions into physical symptoms. This meant that men could now get hysteria, but of course women were still the most susceptible.
这种想法在几千年里都没有大的变化 直到十九世纪八十年代, 神经学家们试图用现代化的方法 来解释癔病的疾病原理, 奥地利精神分析学家西格蒙德·弗洛伊德 发展出一个学说, 认为当无意识心理在 有意识心理因为 过于痛苦而无法处理 记忆或者情感时, 会产生一种物理症状。 它将这些情感转化成物理症状, 这意味着男性也可能会患癔病 但是女性仍然是最易受到感染的,
When I began investigating the history of my own disease, I was amazed to find how deep these ideas still run. In 1934, 198 doctors, nurses and staff at the Los Angeles County General Hospital became seriously ill. They had muscle weakness, stiffness in the neck and back, fevers -- all of the same symptoms I had when I first got diagnosed. Doctors thought it was a new form of polio. Since then, there have been more than 70 outbreaks documented around the world, of a strikingly similar post-infectious disease. All of these outbreaks have tended to disproportionately affect women, and in time, when doctors failed to find the one cause of the disease, they thought that these outbreaks were mass hysteria.
当我开始对我这个病的 历史进行调查研究时, 我非常吃惊的发现这些 观点是多么的深入人心。 1934年, 洛杉矶县综合医院的198名 医生、护士和工作人员, 病得非常严重, 他们开始肌肉酸痛、颈部及 后背开始变得僵硬以及高烧 和我最初诊断的所有症状一模一样, 医生们认为这是 小儿麻痹症的最新形式。 从那之后,全世界有70多次关于 这个有着惊人相似的感染性疾病, 爆发的记载。 所有的疾病爆发都不同 比例的倾向于影响女性, 而同时,当医生们无法找到 任何这个疾病的起因, 他们认为这些爆发属于大规模癔病,
Why has this idea had such staying power? I do think it has to do with sexism, but I also think that fundamentally, doctors want to help. They want to know the answer, and this category allows doctors to treat what would otherwise be untreatable, to explain illnesses that have no explanation. The problem is that this can cause real harm. In the 1950s, a psychiatrist named Eliot Slater studied a cohort of 85 patients who had been diagnosed with hysteria. Nine years later, 12 of them were dead and 30 had become disabled. Many had undiagnosed conditions like multiple sclerosis, epilepsy, brain tumors. In 1980, hysteria was officially renamed "conversion disorder." When my neurologist gave me that diagnosis in 2012, he was echoing Freud's words verbatim, and even today, women are 2 to 10 times more likely to receive that diagnosis.
为什么这个观点一直保持着 这么大的影响力? 我认为这是针对女性的偏见, 但是我同时也认为从根本上来说 医生们想提供帮助。 他们想知道答案, 这个分类使医生们可以去治疗 根本无法治愈的疾病, 给这个无解的疾病一个解释, 这里的问题就是这样做 会造成真实的伤害, 在20世纪50年代,一个名为 艾略特·斯莱特的精神病学家, 研究了一个85名被诊断 为癔病的患者群体, 9年之后,他们中的 12人死亡,30人残疾。 许多人得了尚未确诊的情况 比如多发性硬化、 癫痫以及脑肿瘤。 在1980年,癔病被正式重新 命名为 “(神经)转化性疾患”。 当我的神经科医生在 2012年将我确诊为这个病时, 他逐字地重复佛洛依德的话, 甚至到了今天, 女性确诊这个疾病的概率 仍然是男性的2到10倍,
The problem with the theory of hysteria or psychogenic illness is that it can never be proven. It is by definition the absence of evidence, and in the case of ME, psychological explanations have held back biological research. All around the world, ME is one of the least funded diseases. In the US, we spend each year roughly 2,500 dollars per AIDS patient, 250 dollars per MS patient and just 5 dollars per year per ME patient. This was not just lightning. I was not just unlucky. The ignorance surrounding my disease has been a choice, a choice made by the institutions that were supposed to protect us.
癔病或者精神性疾病理论的问题, 在于他们从来没有被证实过, 很明显的它缺少依据, 至于慢性疲劳综合症, 心理学解释阻止了生物研究的继续。 在全世界范围内,慢性疲劳综合症 是被投入最少的疾病之一, 在美国,我们每年为每名艾滋病 患者投入大约2500美元, 为每名多发性硬化症患者 投入250美元, 而对于慢性疲劳综合症患者 这个数字只有5美元, 这不仅仅是减少, 我不仅仅是不走运, 接受这个疾病一直 被无视已经是一个选择。 这个选择是由本该保护 我们的那些研究机构做出的,
We don't know why ME sometimes runs in families, why you can get it after almost any infection, from enteroviruses to Epstein-Barr virus to Q fever, or why it affects women at two to three times the rate of men. This issue is much bigger than just my disease. When I first got sick, old friends were reaching out to me. I soon found myself a part of a cohort of women in their late 20s whose bodies were falling apart. What was striking was just how much trouble we were having being taken seriously.
我们不知道为什么慢性 疲劳综合症会在家族遗传, 为什么任何一个传染病, 从肠道病毒到疱疹病毒到Q热 感染之后都会得慢性疲劳综合症? 或者,为什么女性得这个病的 概率会是男性的两到三倍? 这些问题比我得这个病本身更严重, 当我第一次生病的时候, 老朋友们都来联系我, 很快我发现我自己成为了一群 在接近30岁的时候, 身体就开始衰弱的女性中的一员, 令人感到打击的是, 被重视的仅仅只是 我们遇到了多少困难。
I learned of one woman with scleroderma, an autoimmune connective tissue disease, who was told for years that it was all in her head. Between the time of onset and diagnosis, her esophagus was so thoroughly damaged, she will never be able to eat again. Another woman with ovarian cancer, who for years was told that it was just early menopause. A friend from college, whose brain tumor was misdiagnosed for years as anxiety.
我认识了一位得了硬皮病的女性, 这是一种自身免疫性结缔组织疾病, 在几年的时间里她被 告知这个病在她的脑部, 在着手治疗和诊断的这段时间里, 她的食道被完全损坏, 至今仍然无法进食, 另外一位得了卵巢癌的女性, 在很长时间里被医生 告知只是早期更年期, 另外一位大学里的朋友, 得了脑瘤却被错误的诊断成焦虑症,
Here's why this worries me: since the 1950s, rates of many autoimmune diseases have doubled to tripled. Forty-five percent of patients who are eventually diagnosed with a recognized autoimmune disease are initially told they're hypochondriacs. Like the hysteria of old, this has everything to do with gender and with whose stories we believe. Seventy-five percent of autoimmune disease patients are women, and in some diseases, it's as high as 90 percent. Even though these diseases disproportionately affect women, they are not women's diseases. ME affects children and ME affects millions of men. And as one patient told me, we get it coming and going -- if you're a woman, you're told you're exaggerating your symptoms, but if you're a guy, you're told to be strong, to buck up. And men may even have a more difficult time getting diagnosed.
这就是为什么让我感觉忧虑的原因: 从20世纪50年代起 自身免疫系统的得病率, 是以前的两倍到三倍, 45%最终被诊断为 已知的自身免疫系统疾病的患者, 最初只是被告知得了忧郁症。 就像古时的癔病, 这与性别和我们 所相信的故事都有关系, 75%自身免疫系统疾病 的患者都是女性, 并且在某些疾病中 这个比例高达90%, 尽管这些疾病不同比例的影响着女性, 它们并非女性疾病, 慢性疲劳综合症也影响着儿童和男性, 就像一位患者告诉我的, 这个病是来来去去变化不定的-- 如果你是女性,他们说你夸大了症状, 但是如果你是男性,他们 鼓励你要强壮要振作起来, 尽管男性会更难以确诊,
My brain is not what it used to be.
我的大脑已经不是曾经那样了。
Here's the good part: despite everything, I still have hope. So many diseases were once thought of as psychological until science uncovered their biological mechanisms. Patients with epilepsy could be forcibly institutionalized until the EEG was able to measure abnormal electrical activity in the brain. Multiple sclerosis could be misdiagnosed as hysterical paralysis until the CAT scan and the MRI discovered brain lesions. And recently, we used to think that stomach ulcers were just caused by stress, until we discovered that H. pylori was the culprit. ME has never benefited from the kind of science that other diseases have had, but that's starting to change. In Germany, scientists are starting to find evidence of autoimmunity, and in Japan, of brain inflammation. In the US, scientists at Stanford are finding abnormalities in energy metabolism that are 16 standard deviations away from normal. And in Norway, researchers are running a phase-3 clinical trial on a cancer drug that in some patients causes complete remission.
但是依旧有好消息: 尽管如此,我依然有希望, 有太多的疾病在科学揭示 他们的生物原理之前, 都被认为是心理上的 癫痫患者会被强制收容治疗, 直到脑电图能够测量 脑部不正常的电流活动, 多发性硬化症会被错误的 诊断为癔病性麻痹, 直到造影扫描和核磁 共振发现了脑损伤, 而最近,我们曾经所认为的 胃溃疡是因为压力过大, 直到我们发现幽门 螺杆菌才是罪魁祸首, 慢性疲劳综合症却从来得益于 这种其它疾病可以获得的科学治疗。 但是这一切开始在转变, 在德国,科学家开始 发现自身免疫疾病的依据, 在日本,则发现了脑炎症的依据, 在美国,斯坦福的科学家 正在研究能量代谢的异常情况, 也就是他们发现了与 正常值相差16的标准偏差, 在挪威,研究者正在进行一个 抗癌药物第三阶段的临床试验, 这个药物可以使一部分 患者得到完全的好转,
What also gives me hope is the resilience of patients. Online we came together, and we shared our stories. We devoured what research there was. We experimented on ourselves. We became our own scientists and our own doctors because we had to be. And slowly I added five percent here, five percent there, until eventually, on a good day, I was able to leave my home. I still had to make ridiculous choices: Will I sit in the garden for 15 minutes, or will I wash my hair today? But it gave me hope that I could be treated. I had a sick body; that was all. And with the right kind of help, maybe one day I could get better.
同样给了我希望的 是患者的恢复力, 在网上,我们走到了一起, 我们开始分享各自的故事, 我们如饥似渴的了解科研的进度, 我们在自己身上做实验, 因为不得已, 我们成为了自己的科学家和医生。 然后慢慢地,我从这里得到了5%的 进展,从那里得到5%的进展, 直到最后,在最好的时候, 我可以走出我的家, 我依然需要做一个很愚蠢的选择: 今天我是将在花园里待15分钟 还是去洗个头发? 但是这给了我被治愈的希望。 我身患疾病,而这就是全部, 如果得到了正确的治疗 某一天我就可以康复。
I came together with patients around the world, and we started to fight. We have filled the void with something wonderful, but it is not enough. I still don't know if I will ever be able to run again, or walk at any distance, or do any of those kinetic things that I now only get to do in my dreams. But I am so grateful for how far I have come. Progress is slow, and it is up and it is down, but I am getting a little better each day.
我和全世界的患者联合起来, 我们开始战斗, 我们用一些美好的东西 把这片空白填满, 但这远远不够, 我仍然不知道我是否还能再一次奔跑, 或者走上一段距离, 或者做任何现在只能 在我梦里出现的运动, 但是我对我现在所能走到的 这一步表示感恩, 进展虽然很慢, 而且有时出现, 有时不见, 但是我每天都在变得好一点点,
I remember what it was like when I was stuck in that bedroom, when it had been months since I had seen the sun. I thought that I would die there. But here I am today, with you, and that is a miracle.
我记得当我在被困在卧室里的样子, 我记得我再一次见到阳光 已经过了好几个月, 我想那时我也许是要死了, 但是今天我在这里, 和你们一起。 这已经是个奇迹,
I don't know what would have happened had I not been one of the lucky ones, had I gotten sick before the internet, had I not found my community. I probably would have already taken my own life, as so many others have done. How many lives could we have saved, decades ago, if we had asked the right questions? How many lives could we save today if we decide to make a real start?
我不知道如果我 不是这其中一个幸运儿。 如果我在有互联网之前生病, 如果我没有找到属于 我的团体,将会发生什么, 我或许已经自杀, 就像很多人做的那样, 如果在数十年之前我们可以问出, 正确的问题有多少生命可以得救? 如果我们有了一个真正的开始, 现在又有多少生命可以得救?
Even once the true cause of my disease is discovered, if we don't change our institutions and our culture, we will do this again to another disease. Living with this illness has taught me that science and medicine are profoundly human endeavors. Doctors, scientists and policy makers are not immune to the same biases that affect all of us.
即使慢性疲劳综合症的 真正原因被发现, 而我们的研究机构和 我们的文化没有改变, 那么下一次我们还是会用同样的 方式去对待另外一种疾病, 与这个疾病共生教会我, 科学和药物是人类深刻地努力, 医生、科学家和决策者 并不能对影响我们的, 所有偏见免疫。
We need to think in more nuanced ways about women's health. Our immune systems are just as much a battleground for equality as the rest of our bodies. We need to listen to patients' stories, and we need to be willing to say, "I don't know." "I don't know" is a beautiful thing. "I don't know" is where discovery starts. And if we can do that, if we can approach the great vastness of all that we do not know, and then, rather than fear uncertainty, maybe we can greet it with a sense of wonder.
我们需要用一个更细致入微的 方式来思考女性健康, 我们的免疫系统就和我们 身体的其它部分一样, 他们是平等的战场, 我们需要去聆听患者们的故事, 并且我们需要乐意说“我不知道”, “我不知道”这句话 是一个美妙的事情, “我不知道”就是一个探索的开始, 如果我们可以做到这一点, 如果我们可以去探索我们 所有不知道的广袤领域, 而不是去畏惧未知, 也许我们就可以用惊叹 向那未知的领域致敬。
Thank you.
谢谢大家。
Thank you.
谢谢大家。